Sjogren and scared
Posted , 7 users are following.
Hi,
I hope someone can help me understand. 2010 I've been going to the doctor to check to find out why i hurt. What hurts are my big muscles like if I had lifted weights, and that muscle/nerve or bone between my wrist and elbo. My things, and the mucle/nerves or bone on the outside of my leg. Not any of my joints. I live in Houston tx, 2010 I was told I didn't have rheumatoid, because my joints don't hurt nor swollen. My blood work shows a high reading of 115 for rheumatoid. I was also checked by a neurologist, ran the muscle test (needles) and muscles were good . I've been going through this muscle pain for too long. I just wanted a muscle, nerve and a bone biopsy to aliminate.. I get checked again for reuhmatiod.. I start taking humira for 6 months, injections, nothing. So they put me on embro nothing again. I still hurt. 2016 This time the blood work shows 7.7 sjogren and 115 for reyhmatoind, my doctor now has me one a medication for any autoimmune or connective tissue. As for the sjogren I had a lip biopsythey rook 5 gland for testing and this came back good no problem. My mouth or eyes are not dry. I went to a second neurologist and he walked in I started tearing up. I just want to have this confusing to stop.. do I have sjogren or not do I have reuhmatoid or not. He looked at me and didn't run test and said he didn't need to run test for sjogren because of me tearing up. He said if I had it I wouldn't be able to tear up. so he sends me back to my reuhmalogist who says I do because of blood work 7.7.
Question can I have sjogren and it not attack my gland maybe I'm really early. I just want to know what is hurting my body parts.. legs and arms only. I'm 51 years old if it helps
1 like, 19 replies
lily65668 Vickieadams
Posted
Oh dear, here we go again... I'm afraid these boards are littered with stories about doctors who don't understand the symptoms of Sjogren's. They're different for everybody, and even different at different times in the same person. I have Sjogren's and I can usually produce tears - though not just at the moment as I'm going through one of my short-term flare-ups of dry eyes.
Like you I also suffer from a lot of Sjogrens-related tendinitis in my wrists, elbows and upper arms, as well as occasional muscle pains. It reached a peak three years ago, when it was really disabling and prevented me from doing normal daily chores. However, the pain has now subsided to manageable levels. I treated it with homeopathy, though I've no idea if this really works or I'm just susceptible to the placebo effect!
I know it's horrible, but try not to worry about it too much as this tends to make the symptoms worse. There's no cure for this condition, but careful management will keep the symptoms under control for the vast majority of sufferers.
Vickieadams lily65668
Posted
Thank you for you help, I produce tears easily. I wake up some morning where I have dry salacia on my cheek. So I don't feel as if eyes or mouth are dry. I hear there are groups that meet up sometimes. I need to find one to meet up with and learn more about it. Is it possible that I do have it, when the lip biopsy says I don't don't but my blood work tells the doctor I do? I live in cypress tx. Everybody knows it as houston tx.. (10 miles)
lily65668 Vickieadams
Posted
Oh yes Vickie, there are lots of stories on here from people who had a negative lip biopsy but were diagnosed with Sjogren's anyway.
I never had a lip biopsy, mainly because dry mouth was only a severe problem during the first year of symptoms, 22 years ago, and at that time I couldn't get doctors or dentists to listen to me. Since then, the symptoms have rotated around other parts of my body, without really returning to my mouth. (So far - touch wood!) I was finally diagnosed on the basis of bloodwork and symptoms - like the majority of people I think. And also like the majority of cases, it took me a full 10 years to get a diagnosis.
However, this has never really bothered me since I decided at the outset that I would only take DMARDs or immunosuppressive drugs if I became severely disabled, which hasn't happened so far. The only prescription medications I take are thyroxine for an underactive thyroid (SS frequently attacks the thyroid gland) and for the past year a steroid inhaler. This is because the general inflammation going on in my body has now settled in my lungs in the form of late-onset asthma - unfortunately another "gift" from SS in many cases! However, it's now very well controlled apart from a rocky start with the inhaler and my doctor says my lung capacity, which was declining, has now improved and is stable.
There are undoubtedly some people on these boards who are suffering very serious, life-changing symptoms. However, don't forget that for the majority Sjogren's tends to be more of a permanent but manageable nuisance rather than a life-threatening condition.
estelle44124 Vickieadams
Posted
I'm not sure what sort of pain you are describing. For many, many years my shins feel bruised when touched. Extremely painful. Really came to light when having a reflexology treatment in Singapore. It was an excruciating experience. I mention this to all the different medics with no result. It's not shin splints, as I don't do exercise that would cause it. It's like someone had kicked me hard. My understanding is that it's Fybromyalgia, which Sjorgrens sufferers also experience. And the dry eyes aren't an absolute for SS, as I understand it.
Vickieadams estelle44124
Posted
Thank you for your help.
Yes it feels like if I worked out my arms and legs hard with heavy wieghts but I don't work out since 2010 when the pain started. It doesn't hurt to the touch it's inside. Could be muscles (I still have my strength not as I did when I was young). Or nerves because it's in there too or is it the bone which doctors don't want to do a biopsy on the bone nieghter. They don't just want to cut on me and I understand but geez I want it to stop hurting. My skin don't hurt. I or my husband will try to massage the area, makes it feel better but it's there. I still run errands etc but when I get home I'm like paralyzed I don't want to move because my arms hurt like lifted heavy wietghts. It could be going to the grocery store
mandy95 Vickieadams
Posted
I have all those symptoms and I have primary Sjorgrens and Fibromyalgia. You can still produce tears with Sjorgrens so the Dr was wrong. My muscles hurt all the time which is part of the connective tissue goes along with Sjorgrens.
Regards,
Mandy
tj268 Vickieadams
Posted
Oh Vickie!!! I am sooooo sorry you are going through the "Dr. Gambit" as I call it. It can be more emotionally draining than physical pain! You are not alone and can always come here. Many of us have went through this same crappola and and are still dealing with it (like myself). I am about your same age and have some muscle paind and joint pains for sure, and YES, I still produce tears and that Dr. has no idead what he is talking about. Your numbers sound like SS and let me tell you symptoms vary on each person. I have dry eyes at times but not horrible by any means and same for my mouth. My problem is pain and dry nose and problems swallowing. I am also dx'ed with Fibro, small nerve neuropthy, hidradenitis suppurativa and other stuff which are supposedly connected. They say if you have one auto immune you are likely to have more and it can be called MAS-mass autoimmune syndrome. I also have my rhuemy and nuero arguing over my SS vs MS even though my neuro says SS and bloodwork backs it. I have heard good and bad about the lip biopsy and won't get one myself.
Just be confident and strong in who you are and stand up for yourself and trust me its hard. I am a big mouth Italian and Filipina and there are times I cry and feel like I am being belittled. My secret...get MAD! Come informed with info showing different symptoms. You may have to insist a DR actully look at what you brought but try! Until they have walked a day in your shoes, they do not understand.
Wishing you the best and please email me if you want to talk more.
phyllis75890 Vickieadams
Posted
I have both sjogrens and fibromyalgia which causes muscle pain. You may want to ask your rheumatologist about that. I regards to your Being able to cry tears, so can I cry tears, but if I chop up an onion I don't shed one tear, so it sounds like you neurologist isn't as knowledgeable as he should be. Ask your rheumatologist about fibromyalgia as the two diseases often go together. Maybe try some slow, gentle stretching of those muscles, but again, slow and gentle. Best of luck!
Megheart Vickieadams
Posted
I have had many life-effecting symptoms related to Fibromyalgia/Sjögren's but one of the most debilitating has been the sore and stiff muscles. Mine have predominately been the leg muscles and I have said to a number of doctors and certainly to my husband, it is as though I climb Everest or mountain climb every day but never get any fitter. The muscle stiffness has been relentless.
Vicki have you been to an Opthalmologist and had a tear production test (Schirmers) done? Mine showed I produced virtually no tears under normal conditions yet when I peel onions I tear up and can tear up with something sad. I do not consider that my eyes (or mouth dryness) have been my worst Sjögren's symptoms by any means. So IMHO your Neurologist was misguided.
Furthermore people seem to come in at different levels of the spectrum for this condition. I came in at the neurological end, with multiple neurological symptoms and negative autoimmune antibodies. It took eight years before tests showed I had very raised ANA's and Sjögrens specific antibodies.
So it is often a long journey to a diagnosis and in the meantime there is a lot of c..p we have to deal with from doctors along the way. I hope you get some resolution soon.
shaq26875 Megheart
Posted
i was diagnosed with SS about 18 months ago ..now not on any meds. about 4 months ago i saw arc of light at the corner of my right eye esp when i moved my head. When to opthamologist did all the 'machines' and said i had Post Vitruoes Detachment (PVD) (had cataract surgery 3 yrs ago) ...and blephritis ..took my meds ..went to follow up yesterday..vision in right eye back to normal, but also tested left eye...I realised that centre of all letters was whiteted out ...with all size of letters.Macular checked ..all clinically normal, but told i had 2ndary cataracts in both eyes and when i told i had SS he did the Schimers test and said both my eyes were severly dry !!! however they dont feel dry ..sometimes they burn or feel they have something in them...(.not sharp like grit but more rounded...like something touching my eyeball.)
?anyway he suggested plugs !!! I said 'yes' but now not sure if i need them !! if i dont need them but have them....will it do more damage to my eyes or will they just weep all the time.
?occcassionally my left side of nose drips for no reason and often that is associated with burning in my throat ( left side only) and irritated inner left ear. Opthomlogist said my nose drip was not related to my dry eye.
?(also have GERD and some Barretts)
?i am waiting for inurance approval to get plugs and more vision tests to rule out macular degeration (age related.. i am nearly 65) and confirm 2ndary cataracts.
?Has anybody gor experience of testing positive for dry eyes but no symptoms? getting plugs in ? are 2ndary cataracts, PVD connected to SS? (Stopped Plaqaenil after 5 months use and that was 15 months ago)
Megheart shaq26875
Posted
Hi shaq26875,
I sometimes think that asking a patient if they have 'dry eye' is not helpful as people experience various eye symptoms with 'dry eye' which may not to the person/patient seem associated with dryness. For example I was telling my doctor in the early days of my symptoms that I 'had heavy eyelids' which made it difficult to open my eyes and keep them open. I also had streaming eyes when outside in the sun which definitely didn't seem like dry eye to me but rather very moist eyes. I also had pain deep in my eyeballs. Did the doctors work it out based on these symptoms? Oh no they did not!
So none of these symptoms were synonymous to what I thought 'dry eye' would feel like yet all of these symptoms have resolved since commencing eye drops to moisten my eyes. Go figure!
mandy95 shaq26875
Posted
I had the plugs put in when I was 29. They lasted until I was 53 and I certainly knew the difference when they had come out. My eyes where pretty much like your before I had them put in, must say it was the best move I ever made. Made such a difference for me. Good Luck, and yes it is painless when inserted.
Regards
Mandy
lily65668 Megheart
Posted
Totally agree Megheart. My first experience of dry eyes was also eyes streaming uncontrollably when I went out in a cold wind. My GP at the time did at least associate this with dry eyes and advised drops, but it still took her another 10 years to get from there to SS! "Old age" was her preferred diagnosis - for dry eyes, dry mouth, peripheral neuropathy, Raynaud's syndrome etc. I was about 50 at the time.
The current dry eye flare-up feels more like grit in my left eye all the time, with some burning and itching.
shaq26875 Megheart
Posted
Thanks Megheart, useful to know that dry eyes doesnt necessarily mean 'grit' sensation in eyes. Give me more confidence in the diagnosis of 'dry eye'
shaq26875 mandy95
Posted
shaq26875 lily65668
Posted
I know what you mean about everything being attributed to 'old age'. the dentist i visisted the first time on getting my medical history said ..'.yeah yeah we all get osteoporosis with age'. I though i would mention it as i was presribed biophosphanates and apparently recent research show that those drugs and osteocronosis of jaw are linked..( 'rare' side effect)
My 88 old mother had loads of other organ problems but never had osteoporosis.
?when i told him i had SS he didnt seem to know what that was.
?All a bit scarey and wanted me to get veneers or crowns on my front teeth for cosmetic reasons (front chipped teeth due to falls as a child) money was the motivator ..maybe i am wrong.
Vickieadams Megheart
Posted
This might sound crazy but how can I tell if my mouth is dry? I feel that I have to swallow a lot because I feel like I would drool. My tongue feel many dry. I'm so sorry I'm trying to get/understand sjogren. I do feel like my eyes are dry in the morning when I first wake up but by early noon they are ok.
Thank you all for the help
Vickie
Vickieadams
Posted
I meant to say my mouth is not dry or I'm not sure how It is suppose to feel.
Vickie
Megheart Vickieadams
Posted
Hello Vicki,
I'm certainly no expert on dry mouth but I'm wondering if the symptoms can be as variable as they can be for dry eye.......like has been mentioned earlier in this thread.
Prior to the onset of Sjögren's I had years of 'geographic tongue' or 'benign migratory glossitis'. This is where there are red circles (somewhat painful) over the tongue which move around throughout the day.....thus the term 'migratory'.
I used to feel that the term 'benign' was somewhat insulting as the condition itself was quite painful and even back then I didn't feel particularly well much of the time. I have often wondered what the incidence is of people with benign migratory glossitis going on to develop other systemic conditions.
I also started to get mucocoeles in my mouth after developing Sjögren's and before a doctor told me to start chewing gum. Retrospectively I wondered if these were caused by dry mouth.
So perhaps there are other examples of strange mouth happenings which may be part of dry mouth or a forerunner to dry mouth. Professionals, like dentists, can often pick up that the mouth is dry long before we are aware of it being so.
My symptoms now are literally that.....dry mouth, whereby the tongue and roof of mouth can be so dry they cleave together. This happens both in the daytime when I find sugarless gum helps me most and during the night, sips of water help a little. I have heard that there is a mint product which helps during the night but I have not used them yet.
IMHO I think it is true, one's mouth can be dry before really getting overt symptoms, just as the eyes can be dry before getting symptoms.